Stinky Neck

Tater's infection seems to have come from the central line. We're still waiting on "official" word on this but that seems to be it. The central line is gone so hopefully the infection is too. Tater also has (had?) a type of bacteria around his trach that is common in patients on ventilators and in ICUs. It gives off a very distinct odor that is sweet smelling and stinky- like a bad case of neck cheese. He smells a lot better now that the trach and the trach ties have been changed (they wait a week to do that so the trach area heals sufficiently). In all likelihood Tater will get this again with having the trach so I’m glad this happened in the hospital-I now know what that smell is. Bleh.

Coco stayed with Tater yesterday while I took Toser home for some Mommy-Toser time. And Wissa stayed with Tater last night so Mr. Awesome and I were actually both at home with Toser at the same time. We took a walk, took him to dinner, wrestled on the bed and just had so much fun with him. Technically, Wissa isn’t allowed to stay here (Coco can because she’s a grandmother and Wissa would make that claim if she didn’t look younger than me). But P.A.M. was here last night and was able to teach Wissa how to suction the trach and show her a few things, so it was an official learning visit. Anyone who keeps Tater will have to know all this stuff and it’s nice to have them learn from the pros instead of us. :) And it was so very nice to be able to spend time with Toser and not have to run back to the hospital. Thank you Coco, Wissa and P.A.M.- we appreciate this more than you know.

And the latest Tater news: he's going to need some type of ventilator support when he goes home. The setting he needs is pretty low as far as ventilator settings go but that little bit is what's helping him the most right now. And in order for him to go home on a ventilator, Mr. Awesome and I have to be trained in home ventilation use. We'll have to go to Children's Hospital in Birmingham and go through their home ventilation program which lasts anywhere from 2- to 8-weeks. Our understanding is that we'll stay in a dorm-type setting and pretty much be on our own after instruction, with help immediately there if we need it (that could be totally wrong but is what we've gathered). Hopefully we'll be able to wean him off the ventilator settings in the future but even then any other type of machine help will have to come through tweaked ventilator settings- the only way to do CPAP and BiPAP for a trach are through a ventilator.

So, off to B'ham we go. When? We don't know. Of course there's a waiting list for the program and no one can say how long we'll have to wait to get in. Tater will have to stay in the PICU here until a spot opens up at Children’s and then will be transferred by ambulance there. We asked about getting in to another program at either Vandy or Emory but we'll have first priority with Children's being in-state and we already have a relationship with the director of the home ventilation program there since he's Tater's sleep study doctor. We'll keep you updated and let you know when we're going.

Mr. Awesome’s Aunt Gigi stopped by on her way through town today and took me and Toser to lunch after seeing Tater. Toser LOVES his Gigi and couldn’t wait to show her the Hospital tram and how he can open all the doors on the way there. I love how he shows off by pushing this button and waving his hand over that sensor. He even knows which tram is the express one and which one stops at the buildings between the childrens’ and main hospitals, even though they switch tracks constantly. All I can say is that he has engineer blood in his veins-literally and figuratively.